Visit to the Rheumatologist...

So, today we got the kids up waaaay early so we could get Mia into Boston for her 9:00 a.m. appointment. But, getting there early was so worth it because this was the first time EVER that we didn't have to wait for an hour in the waiting room. Apparently, no one makes appointments that early...or at least not today. We were able to go straight to the room and wait for the doctor. Nice!

The doctor took a look at her joints and, while he wasn't as impressed as he was the last time we saw him, he definitely agreed she is better than she has been in the past. Although, he said he didn't like all the fluid and swelling he saw on her joints...specifically her left knee. He said what he always says, "I am greedy. I want her at 100%." Which I had to laugh at this time because he says this EVERY time. In my head I was like, "Yeah, doc! We do, too!!" But I understand what he means...

We also discussed how her left leg is now longer than her right leg. When I told him this, he said, "Are you sure it is her left that is longer? Because back in October it was her right leg that was longer than her left." I told him that is what the PT told us after she took measurements of it...and, from what I can see with my own eyes, her left is definitely longer than her right. So, he had her lay down on the table and he measured her again. Sure enough, her left is longer. So, he wants to see her in four weeks from now and wants her to have a scan-o-gram (ha ha...sorry, I think this term is very humorous!). Basically, all that means is she is going to have another x-ray from her waist down. So, the next time we come in she will have that done first and then we will meet with the doctor. And her Daddy will be going with her for the x-ray because he is much better at it than I am (hey! everyone has their weak points!!). So, hooray. Another looong appointment. We made sure we snagged an early time slot, though! ;)

Right now, he said he didn't want to switch her to a "stronger level of medicine." He never said the "s" word, but Jay and I knew he meant steroids. Instead he increased her naproxen from 5mls twice a day to 7.5mls twice a day to see if that helps...and because she is bigger now than she was several months ago. I was hoping that we'd be able to start weaning her off of it, but I can't complain. At least she isn't on steroids. Thank God!

We brought her brace in with us today because it is completey worn out and the velcro doesn't work anymore. She has worn it to bed every night since she got it in December, but I had her stop wearing it the last month or so because it wasn't doing what it is supposed to do - keep her leg perfectly straight at night while she sleeps. When I would go in her room in the morning, only one strap would be on...if any. So, the doctor had us go back down to the "Brace Shop," which is located in the lowermost parts of the hospital near the boilers in the basement (a very creep place!) and they measured her for a new brace. Her old brace was a size 6, so they gave her a size 10 today because she is now 30 lbs. and almost 3 ft. tall! They said we should get a new brace every six months. Good to know.

She had blood work done today, as well. I could hear her screaming from the waiting room - not fun! She did a good job, though. They are testing for numerous things and we should have the results back soon.

He also wants us to look into water therapy for Mia. We talked about this in the past with her OT and PT, but now it is coming from him. So, we are going to look into getting Mia into another therapy program. But, I am excited about this one because, as the nurse told me today, they have seen huge results from their patients who are under 3 years of age who are involved in water therapy. And I know Mia will just love it.

All-in-all, today's appointment was a good one. And, as always, Mia was a trooper! While I was hoping for a more positive response from the doctor, I can't complain. We are continuing on the same path that we have been on for the last six months and we are standing strong and believing God that this will soon be over for Mia. She isn't going to have to wait until her teenage years to see if the JRA will go away. It is gone now, in Jesus' name!!

And Mia was thrilled about her new brace! She told everyone about it. I mean everyone - the people in elevator, the lady at the front desk, the people in the lobby. So, tonight we will decorate a new brace and put new Charlie and Lola faces on it.

Stay tuned for another good report when we go back to see the doc at the end of June.

PT Update

Well, this week is the week. We head into Boston on Wednesday for another looooong appointment with Mia's rheumatologist. More blood work. More x-rays. More waiting. Please continue to pray for Mia this week. Today in therapy her knee was much more swollen than usual and she was still at -3 degrees (although, this is MUCH better than the -20 degrees she was at several months ago).

Also, there was much resistance in her right arm when Mary tried to get her to do certain exercises today. She has a very hard time straightening her arm out and it is really stiff. This is also affecting how Mia does things with her right hand, like, picking objects up or even simple things like dumping out a cup filled with water. Holding her palm out flat (like when I squeeze soap into her hand) has not been possible yet because her elbow is preventing her from doing what she should be easily able to do.

Aside from all the current challenges she is facing, we are believing for another GOOD report on Wednesday when we meet with the rheumatologist.

Also, please pray for that the length of Mia's legs will even out so they are the same. She wasn't like this several months ago, but her therapist says this is very typical of JRA - usually the leg that is most affected tends to grow faster than the other leg making it more difficult to walk.

That's it for now....more on Wednesday.
Mia's Momma :)

PT Update

Today at therapy...

• Mary noticed that Mia's knee is more swollen than usual.
  
  
• Mia had a very difficult time doing the stairs exercise and refused to go up the stairs using her left leg first. The same thing with coming down the stairs...she refused to go down the stairs using her right leg first. It seemed like her left leg was really bothering her today.
  
  
• Mary applied moist heat to her left leg and massaged her knee which allowed for a better extension, but Mia was still protecting her leg during the exercises.
  
  
• Mary measured Mia's knee today and she is around -3 degrees. At her last appointment with the rheumatologist, he said the goal is not only for Mia's leg to be completely straight, but when she is sitting down with her legs together out in front of her that we should be able to lift her left foot up so that it is off the floor. This is something all kids can do. Mia can do it with her right leg, but not with her left because of how the JRA is effecting her knee.

So, these are the things we need to work on with her...and what we need to pray about. Mia goes back next Wednesday for another appointment with her rheumatologist. This will be a longer appointment because they are going to be doing more blood work and checking for any JRA markers in her blood and checking her sedimentation rate. They will also be checking for traces of mycoplasma in her blood.

Will keep you posted...